Through this report, and the survey it is based on, we set out to better understand the experience, profile and needs of family caregivers in Ontario.

The Change Foundation has been working in this area since 2015 with a specific focus on their interactions and experiences with the healthcare system.

Our objectives for this study were to understand:

who caregivers are caring for;

what tasks caregivers are responsible for;

where caregivers are turning for information and support;

how caregiving impacts the lives of both the caregiver and the care receiver;

how caregivers feel about their role as part of the healthcare team;

what additional supports or information could help caregivers in their role.

Our findings from this survey echo what we’ve heard through our other work, including our Changing CARE projects, other research and policy work, and collaborations with other stakeholders. Specifically:

Many caregivers don’t self-identify as caregivers, often seeing their caring role as a spouse, child, parent or in-law, but once the role is explained they ultimately do understand the role they play in their family member’s health care.

Most caregivers feel they do not have a choice in taking on the role.

Caregivers provide a wide range of care and support activities, including emotional support, help with household chores or tasks, and administering medicine.

Most caregivers feel that their family member would not receive the same quality of care and would be in worse physical or mental condition if they were not caregiving for them.

Caregivers generally appreciate the time they are spending with the person they are caring for, believe they are improving the life of their family member and feel rewarded for what they do by their family members.

We believe that Ontario-specific data is imperative to better understanding the specific situation in our province, so that we can ensure that supports and services truly address the needs of caregivers.

In addition to the survey, which provides us with the caregiver experience in quantitative form, we’ve also set up an online panel of caregivers who we turn to on an ongoing basis to help us bring the qualitative side of the caregiver experience to life. This group also helped to provide us with feedback on issues and themes that we highlight in this report. Although our survey and report will be done annually, the website will be updated regularly, so please check back often for caregiver stories and different takes on the survey data. We’ve even created a section on the site where you can manipulate the data yourself.

WHAT’S BEING SAID

The Changing CARE teams with the help of additional experts co-designed surveys to probe the experience of caregivers and the experience of providers. Take a look and adapt the survey and questions at your organization: bit.ly/2FlrsEwpic.twitter.com/fULLtnZReR

Whether you are working side-by-side, collaborating across teams or co-designing between organizations finding your shared purpose allows for a better end result. Determine your shared sense of purpose together to achieve your common goals. #codesigntwitter.com/JodemeGoldhar/…

Regardless of where your organization is in terms of caregiver involvement - building the case, starting the conversation, ready to implement or evaluating the impact - we're confident there's something in our new toolkit to help you out!
Take a look now: bit.ly/2HyePswpic.twitter.com/puR8hKQlF2

We recently surveyed 800 caregivers across Ontario – 71 of who were young carers – and released the results in our Spotlight on Ontario’s Caregivers report. Find out what they said: bit.ly/2QOu1RGpic.twitter.com/wJD0Nl81nV

61% of caregivers admitted they are caregiving because they have no choice.
Our Spotlight on Ontario’s Caregivers report provides a fuller picture on the caregiving experience: bit.ly/2zRU6Jfpic.twitter.com/1teFTF9UiX

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Looking for more information on Foundation projects? Contact us to find out how we’re informing positive change in Ontario’s health care system.

Promoting a positive evolution in Ontario’s health care system by engaging patients, family caregivers and health providers to explore contemporary health care issues.